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Wednesday, March 3, 2010

Many of you have been following Mercy's condition and praying for her for years. But for those of you new to her story, here is a summary...

Mercy has a medical condition called PHACE Syndrome. For her, this is manifested in a very large facial hemangioma which extended into her ear, throat, sinuses, eye socket, and brain.

For the first two years of her life, the hemangioma was barely under control. It grew practically before our very eyes. She was given an unsedated laser surgery when 10 weeks old, resulting in laser burns all over the side of her face. These ulcerated, sending her to the hospital for IV antibiotics. When the infection and scabs healed, she was left with a lot of scarring which will be removed with plastic surgery this summer.

Two years ago Mercy was a frightened little girl... If she saw someone in scrubs or white coats she would start crying. Merely entering the elevator of the hospital would cause great fear.

We started going to Cincinnati Children's Hospital just after she turned a year old. She is no longer afraid of everything. This is mostly due to the GREAT staff in the Hemangioma and Vascular Anomalies Clinic. Mercy says Nurse Carol is her best friend.

Which brings me to the point of my whole post. Last year we fought with insurance to approve the funding for an experimental use of Propranalol in reducing hemangiomas. After going all the way to the president of the company, she started it on March 4, 2009. Here is what Mercy looked like March 3, 2009:

What you don't see, is the fact that she was SO small... below the 3rd percentile on the growth chart.

What you also cannot see is the face that she had so little energy. Her heart had to work so hard just to get the blood supply for the hemangioma that there was nothing left to give her energy.

And HERE is what she looked like this morning... a wonderful sunny little girl who has more than caught up both in size, development, and energy.

She has inspired me to overcome all hurdles to get what is necessary for my children. To be persistent and not give up. To realize that it is a fortunate person indeed who wears ugliness merely on the outside, but is beautiful on the inside. Most of us hide our ugliness deeply inside and never let it be seen, yet it eats away as dearly as Mercy scarring.

Mercy's hemangioma has taught me the value of prayer. Many, many people pray for her every day. Literally around the world there are people praying for Mercy's healing. The phrase, "I'll pray for you," may be the most powerful phrase in the English language.

So here we are. One year closer to the end of Mercy's hemangioma. I will not miss it. But I have learned so much. I have made so many friends I would not have had.

And most blessed of all... I have the treasure of being Mercy's Mom. And love it every day.

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I must stop now, but if you want to see more photos and read more about our journey, you can go here . Mercy will be having plastic surgery this summer to take away the scarring... feel free to subscribe to the blog if you are interested in hearing how it turns out!

Sunday, February 28, 2010

Hebrews 13:15 (New International Version)

15Through Jesus, therefore, let us continually offer to God a sacrifice of praise—the fruit of lips that confess his name.

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I have been singing a praise chorus in my head all day... the one that says, "We bring the sacrifice of praise, into the house of the Lord..."

You may ask why I have been pondering that song today. The words SACRIFICE OF PRAISE never really made sense to me. Why is it a sacrifice to praise our Heavenly Father? It is so easy to praise Him.. he has done so many mighty and wonderful things for me and for the people around me.

But each Sunday morning it is shown me what a Sacrifice of Praise really is. And for the mother of a large family, with many little ones, it is a Sacrifice to praise. It is a Sacrifice to just get to church in the morning. It is a sacrifice to try to get everyone in decent clothing (forget it being ironed), socks that match (or not), and shoes. (Most of the time. Let's not dwell on the time one of my children got to church without shoes. There was a reasonable explanation. Ahem.)

It is a sacrifice just to be there as I am distracted by my many little people. It is a sacrifice to stand holding one of them for the entire service because I don't want them to learn that the church service is a time to play. It is a sacrifice to be there on the days Eric is working and cannot be there to help.

And it is OK. God knows I have not heard an entire sermon in years. It is OK. God understands that my sacrifice is just in getting to His house in the morning. He knows that my sacrifice these days constitutes wiping noses and cleaning sticky fingers.

Someday I will spend hours in prayer. Hours studying the Word. For now I dry tears. I train in righteousness. I try to lead my little ones to Christ.

And that is my Sacrifice of Praise. That is my laying down my life to follow Him.